Death of a Parent

There is much I could say about these two people, my parents, but I think that is for another audience, but you may read between the lines.

Toxic Parents

The thought of my father

Dead

Hovers on its cold energy

A remembrance, no

A recollection, maybe

At arms length

It must not come close

Too dangerous, you see.

 

The thought of my mother

Dead

Earths itself, bonding

To the discharge of belief

Negatives need feeding

So insulate, survive

It must stay that way

Too dangerous, you see.

 

The thought of me, dead

Skulks close out of sight

In a corner of sadness

Like failure at night.

 

Embraced with the dawn

It will not last

I’ll not be a victim

Of those things of the past.

 

1999 ©JohnDaniels

I wrote this after reading ‘Toxic Parents’ by Dr Susan Forward

 

Lament

We, your children

would insert this joke

“.….who art in Manchester.”

if

one of use spoke

of you “Our father……”

 

Remembrances such

as this are no longer true.

Unlike welling sorrows,

not bitter,as for rue,

just for our tomorrows.

 

And, if there is a place

that we might go a while,

go we shall with flowers

to part again and part reconcile

three hundred thousand hours.

 

Too afeared, too late in life,

communion can only inward be.

Like tears upon the waters

our words cast silently

and,

if we can,

rechart the man,

your son and your daughters.

 

Our father…..

who wert in Manchester,

whither thou art now?

 

John Thomas Daniels

1/ 1/ 1926  – 12/ 8/ 2000

©JohnDaniels

 

All at Sea

Skipper

What was it that drove you on holding your course?

I know it was not all your fault, the way you were.

Perhaps you saw the harmful force and thought it best to leave,

Casting us off unto seven generations.

Mate

Why was it you hid the truth using another chart?

Neither was it all your fault being the way you were.

Perhaps you could not admit your part and clung on too hard

Searching for what was lost, but never was.

Crew

We did your bidding, learnt your ropes.

Your passage making is now bereft

So we’ll unpick the knots around our hopes

To run ashore with what time is left.

 

 

My mother had dementia and spent her last year in a nursing home. She had a fall and broke her hip in April and she never really recovered even though the hip joint was replaced. The two months after produced this flurry of poems.

Mum

If you should go today

If you were not to stay

At least we sat warm

Whilst you dozed

Soothed words on your brow

Twined our hands just in case

This turned out to be

Our very last embrace.

 

6th May

©JohnDaniels

 

Peace

Today is a ‘good’ day

Sat in her chair

“That’s not mine!”

But is –

 

Comfort and calm restored

With Cherry Blossom in her eye

Sleep comes easily

Peace after morning coffee

 

Peace

Does she know peace

as her world shrinks?

Peace as her family gathers

Half recognised

Embraced

Peace

Against the odds

Perhaps she does

Perhaps.

 

6th May

©JohnDaniels

 

 

At last – gentle words

Some say we are here to learn.

I would say –

Surely your lesson’s done,

But who am I to say it is so

Or if your fearful battle’s won.

 

Some say the unforgiven burn.

I would say –

Surely they do not know,

But who am I to say it is true

Or if ‘The Gods’ would stoop so low.

 

And you,

Maintained we were your main concern.

I would have to say –

Surely this burden under which we grew

That pleached our minds insidious so

Your main concern – was really you.

But, in spite of all, really it is now all right,

For we are working this history through

And this I too, am sure is so –

For once, with love, you can gentle go

Gentle into that long good-night.

 

7th May

©JohnDaniels

 

 

Awe

Does she recall the awe

In her deepest parts of being

Of when I was first born?

 

For I recall the awe

Of Tom – my son

The awe of what we had done

The enormity

And the disbelief

As breath replaced breath

And all was as it should be.

 

Does she recall the awe

In the depths of her dying

Of when her mother passed away?

 

For I recall the awe

Of Nanny

The awe that she had gone

The enormity

And the disbelief

As no breath came and still

I was as it should be.

 

Now it is the time for awe

In the distance of waiting

For death once more.

 

I can feel the awe

Of life

The awe of how close it lays

The enormity

And the disbelief

As breath rattles breath

And though it is as it is

Or should it be

For sure

My time will come

To face my awe

And let my breath away.

 

3rd June

©JohnDaniels

 

Bedside Manner

Do we whisper

or put on an upbeat show?

Do we sit

or bounce unrelaxed?

Do we ignore the pain

or suffocate with care?

Or

Is there another way through this affair?

 

Is it us who can not cope?

For she has no choice

Nor can she give

Her mind and fear a voice.

 

Outside this room

Reality shrinks till all that’s left

Is

Counted breath

The timed medications

The nurse’s visitations

And thoughts of, how long?

 

And she is deprived,

The memories that grant context,

The knowledge that might reassure,

The comfort that all is as it should be.

 

We wait and watch

We gather and return

To the unreal world

To gather again

Being there

Is all

That’s left

For now.

 

Little intrudes into the remains

Of her existence, except

The significance of discomfort

While it lasts

And

What of the end?

Who might descend

To give her that peace

We wish for

And

What of her soul?

Her mind, her body – gone.

The final mystery

Unsolved,waiting

On our own discovery.

3rd June

©JohnDaniels

 

Holding breath

Four breathings held

Until the first gives way

And we start again

Soon

Four will hold

Only three will go on.

 

Meanwhile

The movement

Beneath the blanket

Is watched

Mesmerised

Not really able

Otherwise

To do

We watch

The deep

The shallow

The irregular

And hold…..

3:45 pm 4th June

©JohnDaniels

 

I did two versions:-

Reduction

i)

We live in a world

Of wants driven on

By media’s time

No space to fill

Impatient for

The next big thrill

 

Precious are the moments

In which time takes

A backward stance

Eternity enters, unobserved

Presently revealed

And

Everything reduces

To a point

A singularity

In time

Where

We may only

Watch

Catching our breath.

 

ii)

In a world of wants

Driven on media time

Every moment filled

Sublime

Impatient for when

We next be thrilled.

 

If time should perchance

Take on a backward stance

Shy eternity presently

Will make itself

Known and everything

Tends to a singularity

As the Falcon on the wing.

 

We

May only

Catch our breath

Enough till once again

The piper bids us sing.

4th June

 

Between the lines

They say there are no words

At times like these

Other than worn platitudes

We have learnt to smooth

Our embarrassed inadequacy

 

They may not be spoken,

But there are word like

That return like bats

To settle in your mind

Fluttering and disturbing

Until each a space is found

 

Settling in the mind

That flutter and disturb

Until a space is found.

 

Such words

As can be spoken

Oft no justice brings

To common emotion

But, with care

Can be read

Between the lines.

4th June

©JohnDaniels

 

Insolent day

 

Insolent day

Gives not a whit

Disregarding

All the joy and grief

And we ignore this truth

Wishing it would

Reflect our mood.

 

4th June

©JohnDaniels

 

My mother died two days later early in the morning, we were there, my sisters and I.

Today is the anniversary of her birth, she would have been 95yrs old.

Patricia Cane         10/ 1/ 1925  –  6/ 6/ 2006

Inappropriate medical intervention at end of life in particular Cardiopulmonary Resuscitation or CPR

I guess most of us have seen ‘resuscitation’ with actors on TV or film in a hospital setting; obviously, it isn’t for real.

Real life CPR is brutal and sadly, even with fit young people more die than will survive. Out of hospital it is a very different story. If CPR is not started or a defibrillator used the casualty’s brain will die within THREE minutes, that is why hospital resus teams run!

I am of an age where one’s mortality needs to be considered and dealt with so as to get on with the business of living. There are things I would wish for at the end of my life and some definitely not. If for any reason I am not able to say what these are then the burden would fall on someone else to decide. From a socio-medical point of view technology and skills have changed greatly. Intervention can be traumatic and not always appropriate

So. if your heart stopped would you wish to have rib crushing CPR performed on you?

A tough question deserving some thought because your answer will depend on the circumstances.

If you’re fit, otherwise healthy, suffer a cardiac arrest and CPR can be started immediately, then obviously, yes and if you survive, fantastic.

With a cardiac arrest it is the heart that stops first with the other organs failing afterwards.

With an ‘ordinary death’ the other organs fail and the heart is last to go. CPR is no use with an ‘ordinary death’, but CPR is being done in these situations.

There are people, nurses, carers, families, in some instances members of the public and even doctors who have been and are still being placed in the untenable position of suffering the consequences from performing inappropriate CPR. Conversely medical staff have been sacked and disciplined for not performing CPR even though there was no medical reason to so do. These are specific concerns over CPR, but other interventions, though not so obviously  traumatic, are still potentially inappropriate.

Currently I believe the rules are inadequate and have been made such that clinical judgement is not given due consideration. As a consequence there is a trend towards inappropriate intervention becoming the norm. Partly this is due to digital technology directing the requirement for CPR and partly risk averse institutions fearing negative actions which might cost reputations and money. It requires sorting out for all concerned.

What is true is that anyone who is concerned about their own end of life should start the conversation about their wishes whilst they are able. You can require that CPR is not attempted inappropriately whilst other procedures are given to benefit your comfort.

For families and carers etc. it is difficult to initiate these discussions. If possible talk to the person concerned, it may well be welcomed and do speak to the doctors and nurses.

Now I’m not a medic so this is from one who is. Warning it is a tough read!

Break his sternum. Break some ribs; crack beneath your hands. Push, push, push; one hundred times a minute please. ‘Good compressions’ calls the computerized voice from the defibrillator. Don’t stop, now feel for a pulse; you’ve got it? OK, now leave him to die again. Pillow? There are no pillows in A&E, we will find a blanket and roll it up under his head. He isn’t for intensive care. What’s his name? 

I don’t know it.

You could tell that story many ways and it is the story of many. I could paint it rosier, add more details, but when I relive these cases I often don’t. I recall it just like that.

‘Cardiac arrest call ED resus, five minutes; ITU to attend’ the voice crackled over my bleep. I arrived in to resus to receive a woman in her eighties who had choked on her dinner, stopped breathing and then had a cardiac arrest. CPR was started at her care home and an ambulance was called. They arrived, cleared her airway as best they could, continued CPR and brought her in. She had what we call ‘return of spontaneous circulation’.

The patient arrived unconscious with a pulse. We transferred her on to our trolley. She had fluffy white set hair like my grandmother, I used to like to pat my hand gently on top of it and watch her laugh when I told her it felt like a cloud. I looked at the patient’s soft wrinkly skin and her tongue, that lolloped out of the side of her mouth next to the laryngeal mask airway that had been pushed inside.    

We knew very little about her, but we set about the basics as a start.

‘This airway isn’t working properly’, I said as I pulled it out of her mouth and discovered a match box sized lump of meat partially clogging the end. Moving on inside, I continued to clear the remainder of her stomach contents that had exploded into her mouth with CPR.   

Airway: check

Breathing: check

Circulation: check 

What happened next? The A&E consultant logged onto the computer and gathered what information we could about this patient who arrived without anybody who had ever known her before.

Dementia, diabetes, hypertension, full-time care and previous admissions to hospitals for falls. 

I phoned my consultant and we discussed the situation. She would not be escalated to intensive care. Death was inevitable; of course it was, that was true from the first time her heart stopped. 

I put down the phone and looked at the monitor. Her circulation was already failing again, so we rolled a blanket under her head and a nurse found a clean gown to place over her broken chest. She was given all the dignity A&E resus could afford her. 

Her family came later and the A&E consultant told them about the series of decisions we had made. They understood and recounted many years of their loved one living with dementia and co-morbidities. They agreed they wouldn’t have wanted her to have CPR and they wouldn’t have wanted escalation to intensive care anyway.

They wouldn’t have wanted her to have CPR.

There’s a form for that, I thought, as I remembered standing in a busy resus department looking at her broken, see-saw chest heaving irregularly on front of me.

There is a form for that. 

By the Secret Doctor

Read the blog and follow @TheSecretDr on Twitter and check out #CalmEndOfLife

Some advice on what to do when a death occurs

http://announce.jpress.co.uk/help?page=lasting_post%2Fwhen_death_occurs;s_source=jpno_dfpc_gco

Many thanks to Dr Gordon Crawford for allowing me to give these links — Imagine you are coming towards the end of your life, can you paint me the picture that you see in your mind’s eye of your dying bed? 

https://www.dropbox.com/s/sxs9kiva9soh2ex/NEJM%20Paint.pdf?dl=0

Giving the medical background for my layman’s blog.

Time to Change from Do Not Attempt Cardiopulmonary Resuscitation

https://www.dropbox.com/s/8gmbn8z3cbbf41n/V2%20Time%20to%20Change%20from%20Do%20Not%20Attempt%20Cardiopulmonary%20Resuscitation.pdf?dl=0

Some potentially useful Links:

Advanced Decision http://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx

A report: Discussing death

Most people express a considerable degree of confidence around discussing death and planning for the end of life. Planning for end of life Yet this expressed comfort and confidence is not always translated into actual discussions and practical planning, largely because death is seen as far off – even among many older people. Recent policy, legislation and campaigns advocate greater openness and discussion around dying and planning for end of life care. What are the public’s attitudes on this issue and how far do these vary for different sections of the population? How far have individuals put plans in place for the end of life and what factors are inhibiting planning in this area?

http://www.dyingmatters.org/sites/default/files/BSA30_Full_Report.pdf

Worth a visit

http://blog.finalfling.com/welcome/

Advance care planning resources

 https://www.dorsetforyou.gov.uk/407390

Dorset – Planning for your future care (pdf, 101kb) (opens in a new window)

Thinking ahead (pdf, 35kb) (opens in a new window)

Advance decision to refuse treatment, a guide for professionals (pdf, 2Mb) (opens in a new window)

Capacity, care planning & advance care planning (pdf, 1Mb) (opens in a new window)

Concise Guidelines to Good Practice: Advance Care Planning (pdf, 256kb) (opens in a new window)

Differences between general care planning and decisions made in advance (pdf, 44kb) (opens in a new window)

Mental Capacity Act 2005 Code of practice (pdf, 1Mb) (opens in a new window)

Best interests at End of Life (pdf, 939kb) (opens in a new window)

Enabling Care Priorities – Gold Standards Framework (pdf, 223kb) (opens in a new window)

Lasting power of attorney (opens in a new window)

Planning for Your Future Care (the National Council for Palliative Care) (opens in a new window)

The Good Goodbye Manifesto

A dying wish!

We don’t remember

Nor chose the manner

Of our arrival

For my departure

There may be choice

And whilst I still

Have life to live

I will choose

To use my voice

To those who

I trust will

Let me go

As I must

When that time

Has come

To be in my own bed

And for those who know

Me best who Care for who

I am or perhaps I was

To let me go

Without

Medics over-stretched

Having to count the cost

Watching their backs

Fighting a battle

Already lost

John Daniels ©2017

In many ways the poem sums up the manifesto. It came from learning of the unnecessary ‘traumas’ caused by inappropriate CPR during and after an end of life death. Often this is due to a neurotic risk averse culture, hence the last five lines. The manifesto is designed to help anyone involved or thinking about the issues surrounding death whether their own, someone they are close to or for those who are working in a professional capacity. It is still a taboo subject, for many people and families.

“In this world nothing can be said to be certain, except death and taxes.” Benjamin Franklin

Whilst death holds an immense fascination we, perhaps understandingly, avoid talking about the realities within our friends and family. This makes necessary conversations much harder to deal with as we or a loved one approaches end of life (EOL). Dylan Thomas may have exhorted his father to ‘not go gentle into that good night’, but better that we open the conversation and restore some ‘gentleness’.  

The Manifesto

As far as is possible we desire and expect:

  1. A good goodbye
  2. In a place of our or, depending on the circumstances, our family or carer’s choosing
  3. To have our wishes and our person respected
  4. Not to die alone
  5. The right to be made comfortable
  6. To be treated with gentleness

The manifesto is deliberately uncomplicated because we and the circumstances of our demise are and will be unique. It is for each person or institution involved to strive to satisfy the requirements.

Do Not Go Gentle Into That Good Night – Poem by Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.